“I feel the responsibility is more on the families than the long-term care system. Too many families abandon their loved ones to the system,” commented Ethelle Lord in response to my post “Elder abuse in long term care facilities needs to be researched now if not sooner.”
I respect Lord’s opinion. However, I also respectfully disagree. It’s easy to point the finger and blame adult children and other family members for “dumping” aging parents and family members in long-term care facilities and leaving them there to languish alone. Because of the stigma and myths associated with the disease, it’s even easier to lay blame when the people in question live with dementia. It’s true that countless long-term care residents go for months, sometimes years, sometimes forever without visitors, and not a soul to advocate on their behalf. But are families the ones at fault? And is it useful to point fingers?
Here are some of the reasons older people are “abandoned:”
- many families place aging parents in long-term care facilities after having cared for them to the point of exhaustion; placement is a bid to save their own lives. Here’s one example: “I have kept my mother in law at home with me and my family for 17 yrs. She is basically bed bound now and requires 24/7 assistance with all daily needs. For the last 3 yrs I have literally stayed in the house with her. I am tired, worn out, and frustrated because no one will give me any relief.”
- many families are forced to place loved ones in long-term care because they are financially, physically and/or emotionally unable to care for them even though they may want to. Some don’t have the skills, some live too far away, others are “sandwiched.” The decision to place their loved one in care is devastatingly difficult to make; it rips their hearts out, but they feel they have no choice.
- some families do not wish to care for aging parents, nor do they feel it’s their responsibility to do to so. And who are we to judge whether that’s right or wrong? Who says children are ultimately responsible for their parents’ quality of life? Parents choose to have children, but if their children as adults choose not to be involved with them later in life, neither society nor government has the right to judge or govern that choice, any more than we can tell people whether or not to have children.
- some parents do not wish their families to care for them, they don’t wish to “be a burden;” and they prefer to be placed in long-term care. I have informally asked scores of people whether they would want their children to care for them as they age. Many say definitely not, particularly care partners in online dementia care groups who say they would not want their children to care from them as they have cared for their parents.
- some families are estranged; they don’t want to be in contact. They just don’t like each other, plain and simple.
- some elderly people do not have children or extended family, and they end up alone as a result.
- some adult children who wish to care for their aging parents are precluded from doing so by other family members, agencies or guardians who have legal control. Sometimes their loved ones are moved without their knowledge, or access is restricted or denied in some way.
- some family members are forced by social services or other agencies to place loved ones in care even though it is against their loved one’s wishes as well as their own.
- some family members are unable to visit their aging parent after placing them in care because they are overwhelmed by guilt, can’t bear to see their loved one suffer, or think it doesn’t matter because their loved one doesn’t recognize them anymore, etc.
- some families implicitly trust long-term care providers and believe their loved one is better off in an institution; they see no need to visit, supervise, or advocate.
- some long-term care facilities prevent family members from seeing their loved ones, particularly if the family members criticize care practices, demand change or aggressively advocate for better care. Jenny Moore, the founder of YourVoiceMatters.org.uk, for example, was banned from seeing her mother-in-law for three years after being “a habitual and vexatious complainant” because she voiced concerns about her mother-in-law’s care. Her case, while extreme, is not unique. In this way, some long-term care facilities hold their residents “hostage” with family members powerless to help them.
- And sadly, some family members place aging parents in facilities for selfish reasons such as wanting to preserve their inheritance. To these people, having their parent’s money after they die is more important than providing them the possible best care while they’re alive.
I was fortunate to be in a position to be able to care in various ways for my mother who lived with dementia. While I chose to do so, I don’t believe adult children are obligated to care for aging parents unless they have a legal responsibility to do so in which case they should fulfill that responsibility or cede it to someone else who will. I believe the overall responsibility for eldercare rests with society in general, the healthcare system in particular (doctors, nurses, healthcare workers, social workers, relevant professional organizations, etc.), government (law makers, law enforcers, regulators, ombudsmen, etc.), long-term care providers (including management and care workers at all levels), and family members who wish to be actively involved.
Regardless of how we collectively decide to handle eldercare moving forward, I believe it’s imperative that we treat our elders with more respect and humanity than we do now.
https://myalzheimersstory.com/2016/03/30/20-ways-to-create-dementia-care-homes-away-from-home/
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
Take my short survey on behaviour here.
Image copyright: tatyanagl / 123RF Stock Photo
My Alzheimer's Story 
Wow!! this post is so thought provoking, in so many different ways, I am not able to even comment on it at the moment, other than to say, that from my perspective, of 4.5 yrs of being responsible for a father with dementia and then a mother diagnosed with Alzheimer’s and a husband at home with early Parkinson’s showing some mental changes already, that I will clearly say, that what our government IS responsible for, is providing a whole lot more support in lots of ways, to caregivers. And that all gov’t money should be equalized between what is covered for placement in facilities via Medicaid and what would be paid to caregivers/families to keep a loved one at home with assistance in the home. Right now, the system set up, is killing or ruining the futures of direct caregivers, because of the lack of emotional and financial support for keeping a loved one in their home or a family home. There are many other parts of the posting that I just totally cannot accept as truth however….and I must think my way through those!
LikeLike
“…gov’t money should be equalized between what is covered for placement in facilities via Medicaid and what would be paid to caregivers/families to keep a loved one at home with assistance in the home. Right now, the system set up, is killing or ruining the futures of direct caregivers, because of the lack of emotional and financial support for keeping a loved one in their home or a family home.”
I’m based in Canada, so I’m not familiar with the US system, but in general I tend to agree with you that care partners are not getting sufficient support and they need a whole lot more.
There are many truths, some more difficult to accept than others. Which particular statement(s) do you not believe?
LikeLike
I think, to be fair, we should start with what exactly your definition of abandoned in long term care meant, because perhaps I am taking the definition farther than you meant it to be. Also, since you are from Canada, perhaps some of the different views on this issue, come from the different cultures between US and Canada or differences based on different governmental systems of capitalism and socialism and how those may affect people’s personal views of responsibility towards family. Also, at least for me and other Christians, our Bible teaching gives us some strong expectations of responsibilities towards our family members.
LikeLike
Joanne, I’m not the one who used the word “abandoned” to begin with, Ethelle was. I’m not sure what her definition is and that’s why I put it in quotation marks.
To give you the history, I posted this post on my blog and on LinkedIn: 25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it
Ethelle commented as follows on LinkedIn:
“This is now a new phenomenon, Susan. You can read about the history of long-term care in my book: ALZHEIMER AND DEMENTIA COACHING: TAKING A SYSTEMS APPROACH TO CREATING AN ALZHEIMER’S-FRIENDLY HEALTHCARE WORKFORCE now available at goo.gl/3uLZyY. Unlike in your article and the public opinion, I feel the responsibility is more on the families than the long-term care system. Too many families abandon their loved ones to the system. Their expectations are mainly three fold: (1) they are tired of caregiving and wish to pass on that responsibility; (2) a large number of families bring their family member to long-term care and then abandon them, rarely visiting or supervising their care; (3) misunderstanding the role of long-term care and their limitations. Long-term care is a life saver when used properly. It is an extension of home care with a larger team of care providers. However the family caregiver must remain an active part of the care team in order to fully benefit from such services. Some long-term care are beyond repair because their main goal is for profit. It is up to the consumer, the family, to research and select the best possible placement. Research does show that someone needing long-term care in fact does as well, sometimes better in long-term care. Why? Because there is someone there 24/7, meals are provided three times a day, and medications are properly dispensed (provided there is properly supervision and family involvement).”
I disagree with just about everything Ethelle says in both her original comment as well as her subsequent comment on this post.
I don’t speak for all Canadians, I speak from my own experience and observations. Each of our 10 provinces and three territories have different ways of dealing with healthcare, so it depends on which province or territory one lives in. Furthermore, I believe that levels of care are determined on micro-levels – i.e. they depend on the skills of the individuals who are delivering care within the facility, which is further dependent on the culture, management perspective, and philosophy of the facility. I think this applies around the world.
You mentioned that “Also, at least for me and other Christians, our Bible teaching gives us some strong expectations of responsibilities towards our family members.” I am not a Christian. And Canada is a diverse multilingual, multicultural mosaic of people of diverse beliefs and values. So is the world. Others may or may not share your “strong expectations of responsibilities towards family members.” You may judge them to be right or wrong, but your judgment is irrelevant to their reality. Likewise, they may equally judge you to be misguided in what you value, but that doesn’t mean they are right, or that you should change what you value and how you behave.
LikeLike
You hit the cause spot on when you wrote “It’s true that countless long-term care residents go for months, sometimes years, sometimes forever without visitors, and not a soul to advocate on their behalf. ” Then, unfortunately, you do not want anyone to take responsibility.
Maturity is not something that comes to all of us, unfortunately for our elderly who are living in long-term care when their family members are abandoning them. I do not agree with such excuses, Susan, as you listed in this article and in your other 10 reasons article you refer to here. Sorry but I do hold everyone accountable, even you in this case.
Shame on anyone who does not have the maturity to stay in touch with someone in long-term care to do their part as a member of a much larger care team. That to me is truly immature and disrespectful.
LikeLike
Like you, I think it’s tragic that elderly people are left alone and vulnerable in long-term care facilities, which are often sadly lacking in so many ways. And it’s certainly not true that I do not want anyone to take responsibility; I don’t know how you drew that conclusion. I agree someone should take responsibility; the question is who? It seems you think it should be family members. I think family members have a role to play if they wish to do so. However, as I said at the end of the post:
“While I chose to do so, I don’t believe adult children are obligated to care for aging parents unless they have a legal responsibility to do so in which case they should fulfill that responsibility or cede it to someone else who will. I believe the overall responsibility for eldercare rests with society in general, the healthcare system in particular (doctors, nurses, healthcare workers, social workers, relevant professional organizations, etc.), government (law makers, law enforcers, regulators, ombudsmen, etc.), long-term care providers (including management and care workers at all levels), and family members who wish to be actively involved.”
The list of reasons are not “excuses” they are simply statements of fact. As for the rest, well, I guess we have to agree to disagree.
LikeLike
Ethelle, I am asking Susan to first define what she meant by ‘abandoned’ before I get into what I think of various points, but, in general, my overall take on these points was much as you said. I’ll probably be saying more about my opinions.
LikeLike
When these patients are left to rot in bed it reflects a backward trend to the days when AD patients were sent to insane asylums.
LikeLike
Ethel you couldn’t have said it better who have we become has a human race. I have had experience with both my Mom And my husband . It is harder than hell. We need a relief program that is free to give caregivers time off to care for themselves. A few hours a vacation that sort of thing. As for myself I am just going to have a plan to take myself out before I get to that stage.
LikeLike
I always planned to take care of my mother. There were 4 of us girls who loved her dearly but she wanted to live with me. My husband and my daughter did not want that so I was stuck in between. She became very verbally abusive to me before she died. My heart was broken; she was angry with me. I have felt the worst guilt and pain feeling that I let her down. I will carry this burden until I die.
LikeLike
Susan,
why don’t you first of all tell us how it is in Canada?
LikeLike
Canada is a big country, and there is a diversity of approaches to health care, but overall I think it’s safe to say that eldercare is sadly lacking in Canada just as it is across North America and most of the Western world. Family members who are care partners to loved ones live with dementia and many other debilitating diseases for that matter, are not supported in the way that they need to be. I think our healthcare system is broken, and unable to cope with the increasing needs of our aging population. I think that care is only as good as the individual people in the front line who provide it, and generally those people are not properly trained, not properly supported, and not sufficiently valued.
From the comments, research and articles I’ve read with respect to eldercare around the world, and most specifically in North America and the European countries, I suspect the Canadian experience is similar to that in other “western” countries with the exception perhaps of the Netherlands and Scandinavian countries.
Where are you Donna and what is it like where you are?
LikeLike
Susan,
I’m in the US, not sure why just now seeing this but have spent at least the last couple days with a friend – a young friend; she’s just now 25; who’s spent at least the last 3 yrs., because that’s how long her grandmother – who raised her – so she calls her mom – because her dad shot and killed her mother and then himself – has been on hospice – it was never a dementia issue, just other debilitating diseases – anyway, she’s spent at least that long taking care of her, with no outside support, just living on her mom’s social security, once she finally got it; she just turned 65 but her younger 2nd husband passed away unexpectedly when she was maybe around 60, just old enough for her to get a widow’s pension – not sure which would have been better or worse – but she spent at least that first couple years before going on hospice aggressively trying to get better, at 60 she wasn’t wanting to think she was dying and not going to have a life; she wound up with one grandchild but she was hoping to live to see more but it didn’t work but point is this granddaughter actually spent more than just the last 3 yrs. while grandmother was on hospice taking care of her; she spent at least the 2 before that. Before then she worked taking care of other elderly, taking them to town shopping, cleaning their house, etc. and getting paid for it but also using that money to help financially support her grandmother because I really don’t believe her grandmother was even quite 60 when her husband passed away so I don’t believe she got any support and even though she wasn’t as bad as she got later, she wasn’t able to go to work and support herself (like another friend whose husband pretty much did the same thing, she’s been able to work); she probably should have already have been trying to get some assistance but who would have thought her younger husband was going to pass away and not be able to support her….so that puts us another couple years, only she was able to leave her then and work, but, like said, it had to go to support grandmother, so it went from her working and supporting her, to then when she could get her pension about the time she couldn’t be left anymore so just in time for it to go the other way, for her pension to be used to not just support her but also the granddaughter who was taking care of her, so in both cases, one income has had to support both of them. The granddaughter kept trying to get some type of pay to help her financially for taking care of grandmother but our system is not set up to pay family to do so – now an outsider….but family is expected to take care of their own
LikeLike
Yes, Donna, there are countless similar tragic stories I’m sure. Caregivers worldwide give up their lives to care for those they love, often with little or no community, social or government support. I believe it will get worse before it gets better. Thanks for sharing this story that highlights the plight of so many.
LikeLike
We tried to give the support we could but we couldn’t just keep them up financially but the grandmother did have a brother who pretty much did and another one who didn’t; you know how that goes; the problem with that kind of support are the strings that try to go with it; think there should be any?
LikeLike
Yep, there always seem to be strings of some kind… 😦
LikeLike
of course I guess if they’re providing the roof over your head that would give them some rights, wouldn’t it? or would it?
LikeLike
I’m not understanding your point…
LikeLike
regarding how they take care of the roof over their head; in other words, are rules allowed?
LikeLike
This post is relevant to all countries. Society needs to carefully look at where we are going in exactly how we are going to care for the elderly. Here in NZ the numbers of people diagnosed with Alzheimer’s is steadily increasing. For the majority of people I know, the decision to place a person into care has been a difficult one. Financially it is very expensive to move into a rest home. Generally people make the decision when safety is an issue.
Re family regularly visiting it can often be geographical. I was the only person still living here so naturally it fell to me to care for Mum until it became impossible for her to be cared for by one person. Mum’s estate paid for my two sisters to make regular trips from Australia to visit for a few days. John’s sons have all left and two have made the odd visit in the last few years. That is the way life is now, people travel more and move to other places. It is easy to criticise but there is always another side to a story.
I talk to ALL of the residents in John’s home. They all think I am there for them too. I take marshmallows for everyone, they love them. I help any of them in different situations. I believe it is up to ALL of us to help with the care of our elderly to ensure they are treated with dignity and respect.
Thank you for your thought provoking post Susan.
LikeLike
No matter what the rhetoric the problem remains a problem. I categorize these people as homeless in a nursing home. Without any soul to minister to another soul, the problem has no resolve. Organize COMMUNITY LEADERS TO CHANNEL THEIR COMMUNITIES TO ADOPT A NURSING HOME. THE NURSING HOME SHOULD OFFER A LIST OF PATIENTS IN THIS CATEGORY. THE FACT THEY HAVE AD DOES NOT MEAN THEY SHOULD BE NEGLECTED. PERHAPS A GP PERFORMING VITALS MIGHT HELP BUT FORGETTING THEM IS A COMMUNITY PUNISHMENT. ALL RELIGIONS HAVE A RESPONSIBILITY. This is one area Government could help by setting up a program under the National Youth Administration, shades of the wonders of President Roosevelt.
LikeLike
Good ideas. I particularly like “adopt a nursing home.” Thanks.
LikeLike
Actually Canada is reflective of all the world facing this AD pandemic with nothing in sight to contain. relief which comes at the terminal moment. Universally if we sit still and do not help the afflicted, we lucky ones are as professionals shirking our humanitarian outreach. Governments come and goes but AD and itss problem remain. The UN and the EU have been lax in this fight and if profit is holding back relief, shame on those who care less about their fellow man..
LikeLike
Yes, I think that’s true. I have anecdotal evidence from around the world that supports you say.
LikeLike
IMO, #8 should be illegal: “some family members are forced by social services or other agencies to place loved ones in care even though it is against their loved one’s wishes as well as their own”. Having said that, I have little faith in the legal system, let alone the health care system, so I don’t think we can look to either of those establishments for solutions. The best solution is probably a collective one, in which we as a society (and a democracy) work together to find quality lifestyles for our seniors. And all adults aged 50+ need to sit down and decide what they want to see happen when they age. Talk to your children, if you have any, or explore the options in your neighbourhood. If you don’t like what you find, join the revolution.
LikeLike
BINGO Lorrie! I couldn’t agree with you more. Let’s keep trying to make that conversation happen…
LikeLike
Honey I live this. My mom is my only family and I do not work. I think about suicide 24/7/365 because COSA this aging agency in PA is forcing my mother to live there. I would love to take matters into my own hands, I may one day. They have destroyed my mother and my life!
LikeLike
The individuals who DESTROYED my mothers life and my life should be shot!!!!!!!
LikeLike
How?
LikeLike
I’m so sorry for what you’re going through Kris, and I hope you can find help somehow…
LikeLike
that why I fully support “voluntary suicide”, why live if you suffer
LikeLike
and Merry Christmas
LikeLike
So do I.
LikeLike
“some families do not wish to care for aging parents, nor do they feel it’s their responsibility to do to so. And who are we to judge whether that’s right or wrong? Who says children are ultimately responsible for their parents’ quality of life? Parents choose to have children, but if their children as adults choose not to be involved with them later in life”
This is the most disgustingly selfish thing I’ve ever read in my entire life!
So adult children have the moral right to abandon their parents, huh? even good parents? wow… what a sick, morally repulsive person you are.
LikeLike
“some families do not wish to care for aging parents, nor do they feel it’s their responsibility to do to so. And who are we to judge whether that’s right or wrong? Who says children are ultimately responsible for their parents’ quality of life? Parents choose to have children, but if their children as adults choose not to be involved with them later in life”
I do not think the author is “sick” etc etc as the other commentator says. But the above quote does presuppose that family members hold obligations to each other, thrust on them by virtue of being born, and perhaps not their liking. Perhaps these obligations ensure unhappiness, suffering and so on. Bu this is the thing. Duty, obligations to others cares not about our damn happiness. Rather obligations such as these grow from doing right to those who gave us life, and caring for them in return, irrespective of whether they were good or bad parents. We are, compared to other centuries in the West so so selfish now and call it a virtue.
LikeLike
1000% agree with you. I see so many people today who seem to think it’s totally fine to abandon their parents whenever it becomes inconvenient for the adult child. It is sickening and indefensible.
LikeLike